venturing out for Ellen’s birthday

33333 Reminder: Laura Fest fundraiser featuring a night of rock this Wednesday at the good ship in Kilburn. See below post for details.

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333332I apologise for another long gap in updates, not having written since the sixth of November. Since then I have been occupied by the continuous planning for discharge, learning about different sources of funds required for care in the community. Various legal complications, limits and preconditions make this an interesting task. It also makes you appreciate what a difficult system it is to maintain for the government due to the subjective nature of determining who needs what level of care and how to fund it. The course I’ve been on is called Independent living and is given by a tetraplegic called Brian O’Shea, who lives with his live-in carer. Throughout the course I have learnt a lot about experiences with carers, advice on how to treat personal assistants and how to hire them. It has put me at ease with regard to some concerns I had, and has given me more confidence in terms of the potential to travel and work in the future.

I have had various excursions, including dinner at my friend Lindsay’s and the trip to Lion King for Ellen’s birthday present, which was incredible. I had visits of various friends including Graham who came last week and treated me to some culinary delights from Brighton.

I visited Ellen’s dad, John’s house on the weekend, John had spent a lot of effort into making his house accessible and made it a very enjoyable weekend.we had many visitors over the weekend including many of Ellen’s friends from Winchester and Cardiff, El ‘s sister and her boyfriend- Nick, Mandy-Ellen’s mum, Tommy-Ellen’s cousin and Tony and Nicky-Ellen’s aunt and uncle. We had a small drinks party/gathering on Saturday night for Ellen’s birthday, and then relaxed on Sunday watching a film called Stardust. I was transported down on Friday afternoon using patient transport and experienced strange feelings coming up to a house where I’ve been so many times before but never as I am now. I felt bad at the beginning for putting out Ellen and her family out so much, I am indebted to them for a most refreshing and enjoyable stay, but realised that they really wanted to help me and probably did not feel put out. This helped me feel more comfortable in asking for help. I had one of John’s world beating fry ups on Sunday and I don’t think I have enjoyed a meal that much in a seriously long time.

During weekend there were a few surreal moments of reflection and realisation that naturally come with visits to familiar places outside hospital. There were moments when I felt completely at home and normal, in amongst the strange new feelings and this was almost like a taste of what the rest of my life will be like, which stimulates strong negative and positive feelings. I had moments during the weekend when I was enjoying myself greatly and my lack of mobility was forgotten about, and there were other times when I was sad and acutely aware of my limited physical abilities but there were also times when I was fully conscious of my altered physical state and having a great time even so. I think an important goal to strive for is to stop comparing myself now with my previous, physically uninhibited self, and to be fully comfortable with my physical limitations. If I ever achieve this I think I will be fully healed.I am only now appreciating how difficult this is to achieve .

the district nurses who came to assist in the morning were brilliant, and it didn’t feel like an invasion of privacy, in fact it felt extremely good to have privacy and lie in on Sunday morning with Ellen, I think this was probably the best time I have had since the accident.

This week is the fundraiser in Kilburn (Laura Fest Rock night), on Wednesday I will try to attend and am greatly looking forward to it.

5 thoughts on “venturing out for Ellen’s birthday”

  1. Dear Tom,

    Thank you so much for again sharing your thoughts and perceptions with your readers. They are such a generous gift to all of us.

    I am so happy for you that you had this wonderful experience this weekend giving you a glimpse of how your life can be after rehab, reassuring you that you will be able to return to a “normal” life with your loved ones around you and be safe and thorougly enjoy it. I am sure that Ellen and her family were at least as thrilled as you seeing you so happy and relaxed in their midst after all these months in the hospital.

    Wishing you more and more experiences like that for a smooth and successful transition into your new real life,

    Veronica
    (who decided to live)

  2. Hello Tom
    It has been awhile since we (Simon, Grace, Sophie and I) have left a message although we do check the site often for news of your progress. I was inspired to check in on you today after a World AIDS day event at the World Bank with Magic Johnson. He is that famous US basketball player who came out 16 years ago with his HIV status amidst prejudice and misunderstanding. I chaired a lively session and left admiring his extraordinary courage and tenacity and his determination to give back to communities across America. Although we have never met I have the same admiration for the courage and tenacity that you display and it is that admiration that has brought me so often back to your site and your story. Today I read about your wonderful weekend away and saw your determination to live as fully as you can in spite of the obstacles. It is inspirational and I have a strong sense that you, like Magic Johnson, will also impact positively on the lives of others. I continue to send my very best wishes and thoughts to you and all your friends and family as you continue with your preparations for discharge and as you think about your plans for the future.
    Caroline

  3. fantastic to read about you getting out there Tom, brilliant progress towards the big OUT, glad you are getting yr brain around the challenges in your amazingly practical and positive way.
    lots of love and see you soon
    H&H

  4. Dear Tom

    Many thanks for your latest update – I have been thinking of you and hoping that nothing bad was happening during the time since you last posted. It’s wonderful to know that you’ve had some good outings and that plans for your life after hospital are becoming more concrete.

    You describe so well the challenges you face in adapting to that new life and how difficult it is to experience familiar situations in your changed physical state. I know that with the support of the many people who love and admire you, you will manage brilliantly. And whatever goals you set yourself for the future I have no doubt that you will eventually achieve them.

    Warmest wishes

    Pat

  5. Hey Tom!

    It’s great to hear about all the fun stuff you’ve been doing and how you’re getting on. So glad you had a good weekend away with Ellen. The course you went on sounds excellent, that kind of preparation for discharge must be really important.

    I’m just about to send you two films in the post. They are French comedies which I really like, I think I might have mentioned them when I saw you and we were talking about the French sense of humour 🙂 Anyway I will put them in the post… hope you enjoy them.

    By the way I liked your comments about the Beckett play! When I read some of those short plays I found them strange and enigmatic… would like to see them on stage some time.

    Anyway, really great to catch up with you via your blog and hear about all your plans… hopefully see you soon. And enjoy the gig!

    All the best,
    Emma xx

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